With Every Breath. A tale of struggle, survival & celebration

Dedication: I dedicate this story to my two heroes. My Double Lung Transplant Donor and her family.

My Frisky Trifecta is living half-glass full. Bold, not blasé. Curious, not complacent. That saved my life and makes me 70 going on 30.

At 62, an unidentifiable virus devoured 75% of my lungs in six hours. It was like an unconscionable piranha. Leaving me to struggle and miraculously survive a non-negotiable prognosis. “There’s only a 20% chance you’ll be alive in a year.” I hung in 1,187 days.

My unformidable team. My Frisky Trifecta and Filipino, Cherokee and Irish ancestors.

What a long journey: 1,187 days dying, 512 days on the Double Lung Transplant Waiting List and 150 days of recovery and rehabilitation. It had more peaks and valleys than the Himalayas.

I’m much too half-glass full to jump straight into this scary tale.
I’ll open with 6.00AM, November 12, 2013.
My first grandchild (a grandson) turns 18 days old today. I can’t wait to run, jump, swim with him.
Been doing my 80-minute sunrise jogging since I was 20. Keeps my lungs pumping enough oxygen for a dozen joggers. My legs as fleet footed as Forrest Gump. Feeling as invincible as Wonder Woman.
All to keep me learning. Playing a harmonica. Speaking Filipino and Cherokee. Building a queen-sized tree branch headboard. Revising my trilogy novel.

2AM, November 13, 2013, I jolt awake.
It’s like a muscle-bulging python, as thick as my thigh, strangles my chest and throat.
My nostrils switch back and forth—squished straws to gapping canyons.
I’m gasping like a revving vacuum cleaner slamming back and forth into a wall.
My cats startle awake. Frazzle-fluffed tails. Airplane ears. Their meowing could crack crystal.
I’m bobbing like an oil rig on steroids. I grip my knees. My cats, Zero and Katie panic-pace under them.
I’m going to die! Help!
I hear Dad, Mom and my sister from Heaven.
“Be determined!”
I dump myself on the floor. Drop and crawl. Grab my phone.
Sid, my neighbor of just three months, answers straight away.
“What the Hell? It’s the middle of the night!”
He hears my horrendous gasping.
“Get outside!”
Hunched, all I see are his snowboard bare feet.
I could kiss them!
He bundles me in his arms. We’re like Ann Darrow and King Kong.
Wait! I’m never a damsel!
Sid switches from his ex-gangster growl to a teddy bear voice.
“Pursed your lips. Exhale long. Count 1-1,000… up to five. Then, do one short inhale.”
I half stand up.
The paramedics try loading me onto the gurney. We play tug-a-war and I’m the rope.
Sid roars. “Look around you! What old lady keeps her shades up 24/7? She’s claustrophobic! Put her in the passenger seat!”

“I can’t be DOA!”
The driver pats my trembling hand. I see doubt in his eyes.
I squeeze my eyes shut and go to my Happy Place. Back, when I was 59 and a cowgirl (jillaroo) on a 66,000-acre cattle station in Outback, Australia. That’s how I placed my PTSD into hibernation.

Six ER medicos work on me like a finely tuned pit crew.
After four hours of whooshed around for every test, scan, etc. I’m in my own room.
A nurse in full PPE scurries in. She whips off my nasal cannula. “You’re carbon dioxide retentive. I’ll be back in 20 to put you back on oxygen.”
It’s like the Isolation Room walls croon, “You’re as lonely as a bone without a dog.”
I’m thrown into a nightmare.
A flip-digital racing clock flashes 48:6:46; and growls, “Why’d you cut this race too close? No time to prepare!”
“I’m always prepared.” I brazenly say.
“Oh, yeah? You weren’t for that python! You can’t run this race. Not with one foot in a grave!”
“Good morning, Ms. Galliher,” says a doctor as sedating as Mr. Rogers.
“It’s Miss Galliher!” I snap.
I don’t want a doctor who’s as weak as water!
But as indifferent as Spock, he says, “There’s only a 20% chance you’ll be alive in a year.”
What? Even me, a retired speech pathologist, knows you start with the diagnosis. Not the prognosis!
Bam! I’m like a deer in headlights. Hearing but not listening.
“Unknown pneumonia killed 75% of your lungs.”
“Terminal COPD. Chronic Obstructive Pulmonary Disease.”
“Hypoxia or breathlessness 24/7.”
“Might be able to walk 15 yards.”
I flip over the menu sheet and write.
“I need to be alone.”
Once he leaves, I compose Joey’s Diehard Plan:
I can’t stop death. But I’ll slow it down. Long enough to play, at least once, with my grandson. And keep revising my trilogy novel.
Screw you COPD, Prognosis, and Death!
And PTSD? I don’t have time for your nonsense!
Let the race begin! I’ll beat you three!

Day 8. Whoo Hoo! I’ll be discharged today. But first a few appointments.
I’ll scream if the social worker starts another sentence with “Because you can’t…” I refuse getting an in-home hospital bed and a wheelie-walker. But the shower seat sounds great.
The pharmacist can only give me three prescriptions. A preventer puffer and a reliever puffer. I refuse the liquid morphine.
As soon as the respiratory therapist sits inches from my head, I’m gasping like a dozen revving vacuums. I write: “Sit by the door! Your perfume! I can’t breathe!”
“Well! No one has told that to me!”
Still gasping, I demandingly tap, “Sit by the door!”
“How can I show you some breathing techniques from there?”
I write: “I’m dying! Not going blind!”
She marches out of my room in a snit.
I add to my Joey Diehard Plan. Don’t let this dying turn me into a snappy, cranky person.
I’m glad Sid and I don’t talk as he drives me home.

I look at my beautiful brand-new queen bed. All I see is that ‘python.’
My three-seater couch really appeals to me. Even though I’m like a pretzel laying on its back. Zero, Katie and I sleep like babies.
My PTSD replays that terrorizing 2AM. But it stops once my tiny Tiffany lamp is ON.
Day 11. Like a gunslinger, I cautiously approach my stall shower. Will I chicken out?
The shower’s steam gives me a hellish hypoxic attack.
I concoct my version of a marine shower. I do one body part at a time. Soap it. Step outside the shower. Do pursed lip breathing. Step back in and rinse.
So much for long, hot showers.
It takes me at least 40 minutes to put on T-shirt and sweatpants.
Just baggy clothes, from now on.
I jump off the scale like it’s on fire.
I haven’t weighed 75 lbs since I was 12! I’ve lost 35 lbs in eight days!
Even opening a flip-ring-top can of soup is impossible. I’m too feeble and breathless. Cornflakes, banana and milk will have to do.
I gaze up at My Happy Wall. It’s a massive collage of photos.
Me, trimming the sails on the 40-foot ‘Tsunami.’ What a great four-day race.
Now, everything in my life’s a tsunami. Breathing. Showering. Dressing. Even eating. Hard to chew while non-stop gasping.
I smile at the photo of Dad and Grandpa. WWII just ended in their Philippines. Dad survived his unpaid stint as a Guerrilla Warfare soldier, 13 to 17. Cherokee/Irish grandpa survived a Japanese internment camp. With just one leg, he roamed the world until he died.
That gees-me-up.
I’m power-shuffling around the back fence’s 25-yard perimeter. I see myself at 50. A fitness instructor, exercising alongside my fitness class ladies. All five one-hour classes.
“Poo to your 15 yards, doctor! With every breath, I’ll live longer.”
Day 15. What’s with ‘2AM?’ Again, I’m gasping like a dozen revving vacuum cleaners.
I pursed lip breathe enough call the ambulance dispatcher.
No wonder I think, self-sufficient me is baaack!
Only in the hospital for three days. Just for nebulizing and intermittent low flow oxygen. And food! But I’ll need help.
The social worker will arrange for an in-home hospital bed and wheelie-walker. And for an in-home assistant, for a couple of hours a week.

Day 365. I’m still alive! I’ve even been cooking. Despite the hypoxic attacks making that take five times longer.
I’ve been revising my trilogy novel in 10-minute blocks alternated with 20-minute lie downs
I really enjoy my daughters’ video calls. I get to watch my one-year-old grandson play.
The Tiffany lamp’s still ON while I sleep.
I still don’t use the wheelie-walker in public places.
Instead, I fake-walk by lengthening my shuffling. I tack from one rest spot to the next. One shop window to the next. One bench to the next. It’s embarrassing when well-meaning people offer to phone for an ambulance.
Until this COPD, I never felt embarrassed. Not even at 10, when my stream of diarrhea cleared a pool full of kids. *Never gobble-down two dozen chocolate mint cookies in 30 minutes.

Day 730. Get out the confetti! I’ve lived twice that prognosis!
But hypoxic attacks now hit me every five minutes. Gobbling almost all my daily 5,000 calories. No wonder I now weigh 60 lbs and am 50 lbs underweight.
I’ve quit that 25-yard power-shuffle. And I can only handle 20 minutes a day revising my trilogy novel. Hypoxic attacks wipe out my energy and concentration.
I only leave my in-home hospital bed to eat or use the toilet. My only socializing is when my in-home assistant helps me one-hour, twice weekly. Before this COPD, I never turned on my TV during the day. Now TV, Zero and Katie are my only entertainment.
I better play with my two-year-old grandson before it’s too late.
Day 763. I survive the 3-hour flight. Ten days, including Christmas, with him, my daughter, and her husband.
My nose memorizes their wonderful scents.
The hypoxic attacks let me hold my grandson for a few seconds. I memorize the sweet feel of that.
I gaze into my 37-year-old daughter’s baby-blue eyes.
Oh, no. They’re pooled with tears. Her lips quiver like when she was a toddler. Seeing me frail is a hurt I can’t just kiss and make better.

Day 764. I find a storybook with only 3-word phrases.
I can only read one word before a long hypoxic attack hits me. The puffer and pursed lip breathing can’t stop it.
My toddler grandson tenderly smiles and pats my trembling hand.
I can go to Heaven knowing he’ll be a true humanitarian.

Finally, after 764 days of dying, the hypoxic attacks take pity on me. I tick off Wish #1! I make bubbles with my grandson for five whole wonderful minutes!

Day 773. With one hour left on my 3-hour flight home, a hypoxic attack clobbers me. I’m doubly glad to wear an oxygen mask. It hides my tears from the passengers’ panicked and pity-filled stares.
Back in the hospital. I’m waiting to find out about my angiogram.
If I have a heart condition, I could end up a gimped, dying person.
Then, like a ray of sunshine…
A doctor, who’s a dead-ringer for Paul Newman, stands inches from my face.
An insatiable smirk fills my lips. I thought dying took that from me.
“120/70. Excellent.”
“You’re 64 but look 46. But you’re dying. What’s your secret?”
I slam shut my gapping mouth. “I’m Mestizo. Half Filipino. We’re pickled…”
“Pickled? Well-preserved! I love that!”
He leans right in.
“I can see Cherokee in your eyes and face.”
“I’m only a bit.”
He throws his head back, laughing. “No wonder you’ve outlived that prognosis. Lots of patience and perseverance.”
“Come on! Walk with me! I’ll tell you how to get a double lung transplant. You’ve got to have one.”
Look at me! I’m march-shuffling!

Once alone, I go online.
I disregard how only 65% of double lung recipients are still alive five years after their transplant.
Then I read about an 80-year-old Irish lady. She has been 100% healthy since her double lung transplant 25 years ago.
I phone one of my dearest friends to share my excitement.
But our chat’s brief. These days, I can hardly do telegraphic speech. Squeeze out single words between gasping.

Day 784. I’m in the Double Lung Transplant Team Director’s office.
Not once has he glanced up from his laptop since I sat down 10 minutes ago.
“Head up. Shoulders back,” orders Mom.
“Be determined,” orders Dad.
“Whatever you do. Don’t gasp,” says my sister.
Of course, that makes me gasp like a dozen vacuum cleaners.
Now he’s forced to look at me. “Tsk, tsk, tsk. You’ve cut this too close.”
I hold up my hand like a stop sign. I quickly write on my notebook: “But ‘cutting it close’ is a crucial criterion to get on the Double Lung Transplant List. My life expectancy has declined from 20% to 18%.”
I feel invisible as he talks to the wall. “Why have you left this until now? Too scared? It takes lots of courage to get through a double lung transplant.”
He scans my long hair. “It’s not as simple as getting a haircut. And look at you!” He thrashes his finger at me like a sword. “Nothing but a bag of bones! Looks like you’ve given up.”
I squeeze out five words. “If you’d let me finish!”
Again, he fiercely shakes his finger at me. “You’ll have your say. After I finish.”
I set a plan. I’ll tote on my puffer plus do the pursedd lip breathing the whole time he talks.
I hear Mom, “You know this is an Inquisition. You’ve got to speak up.”
“You’ve mostly been on your own for 38 years. Your closest family’s a 3-hour-flight away. PTSD has been your problem for decades.”
He bangs his laptop shut like a courtroom gavel. “I don’t think you meet the inner toughness nor the support system criterion.”
My plan to stockpile oxygen works. “I was the primary parent raising my toddler until her early 20s.”
He tries to speak. Up goes my stop sign hand. But the hypoxia attack is extremely strong.
I resort to writing. “She’s a university-educated, self-sufficient, self-confident, professional woman, wife and mother. She’s like what I’ve been all my life. I’ve handled migrating us to a new country. Don’t let my dying fool you!”
He’s stammering. Great!
“We can’t willy-nilly give away double lung transplants. Last year, there were 435 donors. We did 375 lung transplants. Half were single lung and half were double lungs.”
I croak. “160 donated lungs weren’t viable; or not perfect matches.”
I write: “See? My PTSD doesn’t quell my thinking.”
With a slight grin, he signs a mountain of referrals.
“Your only health issue can be your Terminal COPD. These tests must confirm that. There’s a referral to the Respiratory Gym. Gain 30 lbs or you won’t be placed on the Waiting List.”
I could hug him!

Day 785. Yep! The very next day, I zip around to all the appointments. The zillion tests check for everything: cancer, common viruses, HIV, Shingles and Chicken Pox, breast and other female cancers. There’s a Doppler Ultrasound for my heart. X-rays and CT scans to measure the space where two new lungs will go. Vials of my blood. One determines my Blood Type and antigens. I’m Type O. My donor must be Type O. Other organ recipients, with Type AB or Type A can have a donor with all the Blood Types.
Day 795. The moment I wheelie-walker shuffle into the Respiratory Gym, I realize I’m the most gimped. But their smiles tell me we’re all in the same coffin.
I imagine I’m 15. I made my own 4.30 to 7.30AM workout. My barbell was made with two cement-filled coffee cans and a broom stick. Three months later, I got my first Blue Ribbon for an 800-yard freestyle race.
Day 865. After just eight gym sessions, I feel so good, I become Quick Draw Mc Graw using my puffer and pursed lip breathing.
I wheelie-walker march into the Double Lung Transplant Team meeting. Everyone’s there. Director, double lung transplant surgeon, physiotherapist, social worker, and transplant coordinator.
I just passed today’s Six-Minute Walk Test. Walking 164 yards in six minutes. But that’s with oxygen and pushing my wheelie walker.
It’s unanimous. Today, June 16, 2016, I’m on the Double Lung Transplant Waiting List!
Every three months I’ve got to walk at least 164 yards on the Six-Minute Walk Test. Every month’s blood test can’t show other illnesses.
I’ve got to avoid bacteria. So… Can’t get near cigarettes, perfumes, strong disinfectants, petrol fumes, room fresheners, bug sprays, varnish, paint fumes, BBQ smoke, fireplace/campfire smoke, crowds. Can’t soak dirty pots and dishes. Can’t eat: any fruit or vegetable until dish soap washed, mushrooms or shelled seafood, runny-yoked friend eggs, meats sold in showcased butcher and deli sections. And can’t eat Bain Marie’s hot or cold foods.
I jet out my chin, totally confident when the Director says he’ll email the whole Can’t List.

Day 975. I haven’t skipped a single day’s 5,000 calories of absolutely nutritious food. That’s tough because hypoxic attacks disrupt my chewing.
It’s as quiet as a funeral home when I shuffle into the gym.
My gym buddy didn’t get over her cold. She had been in the hospital on dialysis for three weeks.
I’m shattered. How could she—a 52-year-old, cherished wife, mother of four adult daughters, with 12 grandchildren; and a great grandson on the way… Now be in Heaven?
I head to the mall to buy a sympathy card. As I wheelie-walker shuffle, I home-in-on every healthy person’s face. My dull eyes, pale face, sunken cheeks, and scarecrow body… All a sharp contrast to their sparkling eyes, rosy-cheeks, fit bodies and speedy walk. They’re still in life’s exclusive Healthy Peoples’ Club.
My dumb PTSD rears its head. It’s like Groundhog Day. On the Waiting List 210 days, to-date.
Shut up! What about Brian? He got his new lungs after waiting 8 hours! Carrie, after waiting five months!
Day 1,180. Wow. Today’s Transplant Team meeting is a total downer. No one’s smiling. They know I’ve been in the hospital at least 10 times these last 40 days.
Even the Director’s voice cracks. He drops his head. “Fill this prescription. Stop torturing yourself with 24/7 gasping.”
I squeeze out, “No. It’s morphine.”
As I wheelie-walker shuffle out, I feel I’ve left my Wake.

It’s Day 1,187 of my apocalypse. It’s that unforgettable hour, 2AM, April 9, 2017. After 10 months and 3 days or 333 days on the Double Lung Transplant Waiting List… I get my Phone Call. I was born on a Sunday! I’m about to be reborn on a Sunday!
Tough Sid can’t hide his excitement. He’s a chatty-Kathy the entire way to the airport.
I’m amazed by how composed I feel. I think that’s because Zero and Katie will stay in our home for the full three months I’ll be gone. With Sid caring for them.
It’s 5.00AM and with an hour before boarding, I text-message dozens of people. They’re all overjoyed to hear the glorious news.
What my daughter says gives me joyful goose bumps. “Mom! This… No! YOU are AWESOME! You made it! You’re going to live! I love you!”
An airline hostess pushes my wheelchair to the airplane. I feel confetti going off inside me. “Bye-bye COPD! Adios Dying! See you much later, Death! With every breath, I knew I’d live!”

Once at The Alfred Hospital, I feel like the Birthday Girl with all the medicos smiling as they greet me.
I’m whooshed all over the place. Getting all the pre-transplant blood tests, X-rays, etc.
After I’m sponge-bathed and in my hospital gown, at last I’m alone. It’s dead quiet except for the soothing sound of a breeze whistling through the slightly open window.
From out of nowhere, crushing grief hits me. I tenderly pat my chest.
“Oh, my tiny bit of lung, I owe everything to you. You’ve more than had my back. YOU hung-in and hung-on by a thread, all these painful 1,187 days. Thank you for never forsaking me. Never doubt you’re my hero. Please make friends with my other hero. My Donor.”
I hear my dad. “You’ll become an eagle. When eagles are about 40, they fly to a mountain peak. Pluck out their old, matted feathers. Smash their beak and talons. Don’t eat for five months. Not until they grow new feathers, beak, and talons. They’re reborn.”
“Great news. It’s a match.” Says the Lung Transplant Surgeon.
He leans into my face. “Joey, we’re cutting this a bit too close.”
“I know. The airplane was an hour delayed.”
“You’re very frail. If you had just gone into palliative care a few months ago…”
With a brave and confident smirk, I say, “I accept everything happens when it should. And Doctor, we’ve got this.”

It’s April 12, 2017. I’m being roused after three days in induced coma. Boy, am I relieved! Everywhere I’ve ‘looked,’ there’s been this spooky ethereal blue. Like the sky in Disneyland’s Blue Bayou ride. All three days, I’ve feared, have I been abducted by aliens?
I hear my sweet Wonder Woman Angel, the transplant social worker. “Joey. Time to take your first full breath, after 3-1/2 years.”
I close my eyes, listening. No more ventilator sounding like Darth Vader. No more scary beeping gizmos.
My eyes are as big as dinner plates. I give her a mischievous jack-o-lantern smile. I belt-out singing, “I’m in Love with a Big Blue Frog.” My daughter’s favorite song since she was a toddler.
We’re laughing like crazy.
Up stroll three steel-faced doctors.
My oxygen saturation was only 80%. It must be 87%.
I get a tracheotomy. Am back in ICU. Re-hooked to a ventilator. And so, starts the five ‘hiccups’ that stretch the ‘normal’ 12 weeks of recovery/rehabilitation into 35-weeks.
1. Naso-gastric fed for five weeks. Can only suck on Q-Tips dunked in water.
2. Blood pressure dangerously plummets because of dehydration. IV fluids 24/7 for seven days. Incontinent around the clock.
3. Reactions to essential anti-rejection med Tacrolimus. Severe trembling and mild stuttering for 12 weeks. From shoulders to heels, I feel like I’m on fire for seven nights.
4. Reaction to essential anti-rejection meds Mycophenolate and Valganciclovir. Vomiting and diarrhea after every meal, for 12 weeks.
5. Re-hooked to ventilator eight weeks instead of three. Can only talk using a Speech Valve when I’m allowed off ventilator a little each day.

People say I’m inspirational because I dealt with my whole 1,699-day journey from deadly prognosis, through transplant, through recovery/rehabilitation, to returning to a 100% healthy life.

Today, I’m 70. Four years and eight months since my donor and her family blessed me with a Second Chance at Life. Together and every day, in spirit, we—jog 80 minutes, cycle 30 minutes, do 30-minutes of leg exercises and killer Pilates. We’ve done five half-marathon runs the last four Double Lung Transplant Anniversaries. We will finish Tasmania’s challenging Point to Pinnacle Half-Marathon Race November 2022. I’ve played in-person, with my 8-year-old grandson. Revised my trilogy novel 12 times. My beautiful lungs are 118%.

My paying-it-forward. Joey & John Walk & Swing Fundraiser for the Lung Foundation. SOS—Save Our Sick Campaign encouraging organ donor registration. Gave a ‘Thank You’ speech before 200+ donor families.
I’ve painted my van for road tripping around Australia; home to daughter and I for 33 years. “Thank you, Australian government for paying in full, for my 1,699-day rebirth journey!”

Never The End…
Forever A New Beginning
Photo credit: Images courtesy of the storyteller.

Story shared by...

Joanne Galliher

Retired: speech pathologist, teacher, case worker, vocational training, fitness instructor, etc. www.wavesofoneseawriting.com